“My initial experience of illness was as a series of disconnected shocks, and my first instinct was to try to bring it under control by turning it into a narrative. Always in emergencies we invent narratives.”
from Intoxicated by My Illness by Anatole Broyard
Fever of Unknown Origin, what it’s all about.
When I was 42 I developed a mysterious disease. It started slowly, with a rash that came and went over many months. Next came fatigue, periods of chills and low-grade fevers. A mildly sore throat. Off and on. For months. I did my best to work around it until the week that my fever spiked to 104 five nights in a row and my husband took me to the ER. I spent weeks in and out of the hospital, came close to dying, while a series of doctors tried to identify my disease so they could treat it. Finally some solutions began to help and I recovered enough to go home and, slowly, to rebuild my life. To reattach to my husband and children, to reconnect with my therapy colleagues and clients. It took months for me to wean off the medications and to regain all my energy. The consensus was that I had a chronic autoimmune disease.
As soon I was well enough, had strength enough, I began writing about those weeks of illness. The facts, the feelings, the strangeness. What I had learned and what I had lost. I needed to understand it all, to get hold of it, to name it, to control it. To settle it down in my memory so I could put it in a box and store it away. I went to new doctors looking for a more precise diagnosis. Two rheumatologists in Milwaukee plus a doctor at the Cleveland Clinic agreed: I had Adult Onset Stills Disease, aka: AOSD.
Two years after that first bad flare-up my mother had a massive stroke. My father was already in end-stage emphysema and having more and more difficulty with everyday tasks like eating and breathing. In the emergency room, on the day of her stroke, while my mother lay half-conscious on a gurney, partially paralyzed, she said to me, “Well, now you’ll have something good to write about.”
I had no intention of writing my mother’s –or my father’s—story rather than my own, but little by little, the things my parents were dealing with in their final years began to parallel the other things I was writing about. They were facing (or not facing) their own mortality, their own losses, and doing what they could to control the uncontrollable.
Fever of Unknown Origin is about all of that. My story, their stories. What each of us did to maintain hope, to find meaning or to give into chaos. How we each suffered and rallied, laughed, loved, forgave, and let go. About how we each dealt with living in the shadows of the unknown and the unanswerable.